Tag: home care

State Budget Update

North Carolina is required to balance its budget each year, and health and human services makes up 22.4% of the already tight $24 billion budget

In North Carolina and across BAYADA’s GAO states, our legislative goals tend to revolve around two main tenets: First, achieving policies that streamline processes so that service offices can operate without added burdens and so residents can readily access care, and second, to increase reimbursement rates so that we can recruit and retain the caregivers necessary and ensure that we have the supply necessary to meet the demand.

It seems like common sense—North Carolinians want to stay in their homes, and home care services cost states less than care delivery in a different setting. So why can’t legislators simply fund home care programs at higher rates? The truth is that there are many competing interests and priorities, and limited amounts of state resources.

It is important to recognize the constraints with which lawmakers must work. Last year, Health & Human Services represented 22.4% of North Carolina’s nearly $24 billion state budget, second only to education, which represented 57.5%. Looking forward to the upcoming budget year, the state’s fiscal research arm reported that top budget pressures include: public schools, higher education, the state health plan, and Medicaid/Health Choice—meaning that there is a lot of pressure on the state’s already tight budget—and that’s not to mention the other interest groups we compete with, such as state nursing homes and other healthcare coalitions.

As GAO continues to garner legislative support for $29.5 million in state funds needed for the Medicaid rate increases we are seeking, advocacy efforts will play an important role. Please watch for ways to support our legislative ask, and please reach out to Mike Sokoloski at msokoloski@bayada.com to learn how you can get involved in advocacy on behalf of your staff and clients.

NC Bills we are following

“I’m just a bill” – Knowing the path by which a bill must travel is important as we follow various bills.

To date, 824 bills have been filed in the North Carolina General Assembly this session. GAO continues to work through the proposed bills to evaluate their impact on home health care, home care, and hospice. Below are a few bills that are of interest:

Home care champion Representative Josh Dobson submitted the bill that extends the deadline by which certain providers, including home care and home health care agencies, must participate in and submit data to the state’s Health Information Exchange Network, NC HealthConnex. We commend the bill sponsors for this delay.

While participation in and submission to NC HealthConnex is
important and necessary in that it grants both the state and providers electronic,
timely access to demographic and clinical data, our industry and others provider
sectors do not have a consistent platform or an easy way to gather and transmit
the required data. Access to this data and clinical information will help the
state and providers identify spending trends that will facilitate health care
cost containment while also improving health care outcomes only if the data is
reliable and consistently reported.

This extended deadline proposed by House Bill 70 grants us
additional time to meet the reporting requirements. We thank all the bill signatories for
recognizing the administrative burden and granting additional time to meet the
requirement.

The bill passed both the House floor on March 27, 2019 and is headed to the Senate.

Our health care members, a home care nurse (White), a hospital administrator (Lambeth), a nurse practitioner (Adcock), and a hospice nurse (Cunningham), introduced H745 to increase the Medicaid funding for nursing under PDN from $39.60 to $45.00 by requesting $4.1M for 2019-2020 and $8.3M for 2020-2021 in recurring state funds.

As health care leaders, they recognize the importance our services play in keeping some of North Carolina’s most clinically complex citizen at home and out of more expensive settings. While the necessary funds were not allocated in the House Budget, we have an opportunity to get it into the Senate Budget and are continuing to advocate for this option.

This bill appropriates 500 Innovation Waiver Slots to address the waiting lists. It would support North Carolinians living with intellectual and developmental disabilities (I/DD) and help them receive needed services within their home and community. The bill proposes to appropriate $5.3M for 2019-2020 and $10,9M for 2020-2021 in recurring funds.

This
proposed bill attempts to address several different health care issues in one
bill. This approach makes it challenging to garner support in its entirety. The bill includes the following provisions:

Elimination of Certificate of Need (CON) – Any action that erodes the established process by which a need is determined may lead to destabilizing our health care industry. The established CON process allows for any group to apply for a Special Needs Determination should they feel health care needs are not being met in their community.

Establishes a carve-out for PACE organization – Any action that allows a group to be exempt from following Home Care Licensure Rules puts recipients at risk as the organization would not be required to follow health and safety rules outlined state licensure.

Medicaid Expansion – Any opportunity for the North Carolina’s working poor to have access to health care coverage, the better. This provision includes a work requirement with exceptions for individuals attending school and or deemed disabled.

Addition of Innovation Waiver Slots – Any opportunity for more individuals living with intellectual and development disabilities (I/DD) to have access to needed services, the better.

The introduction of this bill is the first step in a long process. GAO will continue to monitor and support the I/DD slot provision which aligns with our access to care goals. Some of the other items are very controversial because they create a slippery slope on oversight.

To find out what you can do to encourage your legislators to support the introduction of this bill, contact Lee Dobson at ldobson@bayada.com.

Last
year was Rhode Island’s first year with a full-time Government Affairs Office
(GAO) program—And what a year it was. Together with our Rhode Island office
staff, field staff, clients, and families, we were able to band our voices
together in advocacy to achieve monumental increases on behalf of our staff and
clients.

As a
result of our efforts, the State increased Medicaid rates for certified nursing
assitants (CNAs), and to the State’s private duty nursing (PDN) program. These
increases allow BAYADA to raise field workers’ wages and better compete for a
larger segment of the workforce. As a result, BAYADA is in a better position to
recruit and retain the staff necessary to keep up with demand, and Rhode
Islanders are poised to see increased access to reliable, consistent care.

Our
work is far from done. BAYADA’s GAO, along with the continued advocacy of so
many of you, is focusing on four key issues at this time:

Priority #1: Continued COLa Adjustments

GAO Director for RI and NY, Ashley Sadlier, testifies in support of COLa adjustments for home care workers

The
2018 increases also included a first-in-the-nation Cost of Living adjustment
(COLa), which will provide additional increases to Medicaid rates
every year based on the Bureau of Labor Statistics’ Cost of Medical Services
annual adjustment. Our first majority priority
for 2019 is to ensure that the state keeps its commitment to COLa and
includes it in the state budget each year. If passed, this year’s COLa will add
an additional 1.9% to current rates to ensure they remain consistent with
actual, determined cost of living increases. In March, GAO director Ashley Sadlier testified in support of this
important adjustment in front of the House and Senate Finance Committees alongside
other supporters. At this time, we see no opposition and continue to monitor COLa
through the state’s budget process.

One major
issue that Rhode Island’s skilled nursing offices often face is recruiting the
specialty-trained nurses necessary for more complex, high acuity clients. Luckily,
home care supporters in the House agree. Recently, representatives Patricia Serpa and Mia Ackerman introduced House Bill
5621, which calls for a 10% increase to Medicaid reimbursement rates for nursing
services provided to clients with tracheostomies and/or ventilators. The bill
has taken the next step in the legislative process by being referred to the
House Finance Committee. Currently, GAO is awaiting a date for the bill to be heard.
If you, a loved one, or your staff or clients would benefit from such a bill,
please reach out to asadlier@bayada.com!
We hope to have a strong showing of support at the state house when the bill
moves forward and we would love your help.

Priority #3: Helping Pediatric Clients
Transition to Adult Clients

BAYADA is working with the State of RI to streamline processes for medically complex Rhode Islanders transitioning from pediatric to adult home care

BAYADA has collaborated
with the Rhode Island Partnership for Home Care (RIPHC) to advocate for
additional resources for pediatric clients currently receiving home nursing
services who are transitioning to adult services. Currently, clients that are transitioning face many challenges
navigating the system, especially when determining what programs and
services they are eligible for. BAYADA and the Partnership have met with the
Executive Office of Health and Human Services (EOHHS), the Department of
Behavioral Healthcare, and Developmental Disabilities and Hospitals (BHDDH) and
Managed Medicaid, to create plans on how
to streamline the process for this population and expand eligibility options
for families. To date, several BAYADA clients have transitioned to a more
appropriate program for the level of care that they require. GAO looks forward
to continuing to help our partners at the State to develop plans to ensure
parents, caregivers, caseworkers, schools, and agencies are equipped with the
resources necessary to assist families in navigating the challenges of
transitioning from pediatric to adult home care services.

Priority #4: Continued
relationship-building

BAYADA and the RI Partnership for Home Care meet with Rep. Joseph McNamara

While
2018 brought success to Rhode Island’s home care front, GAO continues to build
relationships to ensure that legislators and regulators understand the
importance of home care to so many of Rhode Island’s families, and support
policies that ensure its accesibility. Recently, alongside the Partnership, GAO
director Ashley Sadlier met with Rep. Joseph McNamara, the Chairman of the
Rhode Island House of Representatives Committee on Health, Education and
Welfare. Rep. McNamara is in a key role to influence legislation, and BAYADA looks
forward to continuing to be a valuable partner to Chairman McNamara—and many
other key legislators and regulators—on issues such as employee training and
supervision, access to care, and challenges that providers, employees, and
families see within the home care industry.

More than 50 home care employees, clients, and family members attended the DE Association for Home and Community Care Legislative Day!

Delaware Ambassadors and employees have set participation records
at two key annual advocacy events this year—The Delaware Association for Home and Community Care (DAHCC) Legislative Day
and our annual testimony in front of Delaware’s Joint Finance Committee (JFC).

The first, the Delaware Association for Home and Community Care
(DAHCC) Legislative Day on March 13, had a
record attendance of more than 50 attendees! 41 registered for the event,
which would have been a record itself, but the larger-than-expected turnout was
an impressive surprise. Seven providers,
including BAYADA, were represented, and the crowd included six families advocating for themselves
and their nurses. Everyone wore their own company’s branded gear but united
behind Hearts for Home Care buttons that proclaimed, “Home Health Care Matters to Me.” Legislators heard our message was heard loud and clear.

BAYADA employees made their voices heard in front of the DE Joint Finance Committee

In another first for Delaware, two legislators spoke in support
of a large rate increase for Delaware’s home care RNs and LPNs at the DAHCC Day Press Conference. To make it
even better, the two were none other than the Senate Majority Leader, Senator Nicole Poore, and the House
Majority Leader, Representative Valerie
Longhurst. Both spoke passionately about the importance of home care in our
communities and the need to increase reimbursement to ensure that this vital
care is available to those who rely on it.
They were joined in speaking by the Executive Director of DAHCC, Jean Mullin, and BAYADA client Haley Shiber.

A week later, on March 20, Delaware advocates broke another
record when 15 members of our community
testified before the powerful Joint Finance Committee (JFC) in support of
increasing Medicaid home care reimbursement rates. Led by Jean Mullin, participants included Torie Carter, Jenny Scott, Mandy Brady, Judeth Smith, Ali Knott,
Danielle Myers, Shannon Gahs, Dave Totaroand representatives
from Epic/Aveanna and Maxim/Aveanna. Client Haley Shiber was unable to attend in
person but sent a powerful testimony video to the JFC members before the
hearing. The Joint Finance Committee hears budget requests from all state
agencies and testimony from the public before making an annual budget
recommendation to the full General Assembly. The General Assembly frequently
follows the majority of those recommendations. Members of the committee told
BAYADA in the days following the hearing that they had never before seen such a large contingent testifying on a single issue!

The industry-wide coalition led by BAYADA and DAHCC is pushing
the Delaware legislature for a 21%
increase in the Medicaid home care RN and LPN rates, which would impact our
Skilled Nursing practices—Pediatrics and Adult Nursing. Because of the home
care Rate Floor passed two years ago mandating that Medicaid MCOs pay no less
than Medicaid fee-for-service, these new higher rates would have to be paid not
only for “straight Medicaid” hours but also those funded by managed care in
Delaware. These two rates currently remain at their 2006 levels, harming our
ability to recruit and retain the highly-skilled RNs and LPNs that are so
important to the lives and welfare of our clients.

Thank you to our advocates
who turned out and made sure that Delaware’s decision makers know that we are
here to advocate on behalf of our staff and clients, and that home care makes a
difference in the lives of so many Delawareans!

BAYADA Legislative Champion, Assemblywoman Carol Murphy, recently introduced a bill which will
address unequal access to the purchase of modified vans through the Catastrophic illness in Children Relief Fund. The bill
is named after BAYADA client Mary Montague.
Not only is Mary a client—but the daughter of an employee! Mom Tara Montague works in the Government
Affairs Office (GAO) as client and family advocacy manager. Mary and Tara have
utilized the fund, and have been important advocates in ensuring the fund is
both adequately funded and accessible for the many New Jersey residents that need
it.

Currently, families can apply to the Catastrophic Fund to
purchase a modified van so that they can safely transport their medically
fragile child. However, current
regulations require that families pay for the van upfront and wait to be
reimbursed by the Fund. This stipulation presents a sincere barrier to
transportation for families that cannot afford to front tens of thousands of
dollars while they wait to be reimbursed.

Mary’s Law addresses this issue by requiring the Catastrophic Fund to provide direct payments for the purchases of specialized, modified motor vehicles. In addition, this legislation will increase the annual surcharge for New Jersey employers from $1.50 to $3.00 per employee to insure the Catastrophic Fund is adequately funded to meet the its purpose and demands.

“Medically fragile children like Mary deserve to travel safely and freely. This legislation ensures that children and their families receive the help they need regardless of their financial situations. Ever since Mary was born, I’ve been a staunch advocate for her needs and for better laws and policies, but I never thought advocacy could hit so close to home–Mary and our family are ecstatic that we can bring about change for all New Jersey’s children and families that need it,” said Tara.

Thank you to Tara and Mary for continuing to be effective advocates on access to transportation. GAO will continue to provide updates as the legislation progresses through New Jersey committees and chambers.

If you have questions about this legislation or how to get
more involved in advocacy at BAYADA on behalf of yourself, a loved one, or your
staff and clients, please contact advocacy@bayada.com today.

Home health aides keep hundreds of thousands of disabled adults and seniors at home and out of costlier settings.

As home care clients, employees, caregivers, and family members,
we know one thing for a fact: Home health aides do incredible, compassionate
work that enable hundreds of thousands of residents across the country to stay
at home and out of costlier, more infectious settings like nursing homes and hospitals.
And we certainly know another fact: The
work that aides do is invaluable, and it’s time that they begin to receive a
fair wage for the hard work they do.

Low aide wages have recently made national headlines and the message is clear: We will need more and more home health aides as America’s population continues to age. But home health care providers are having trouble recruiting and retaining the quality, reliable workforce needed to keep up with the growing demand.

Recently, Hearts for Home Care advocate and BAYADA Home Health
Care’s chief government affairs officer, Dave Totaro, submitted his opinion
on the matter to STAT News, a media company focused on finding and telling
compelling stories about health, medicine, and scientific discovery. He posed
the question:

“To say that home health aides’ work is demanding is an understatement. They make it possible for 14 million Americans to stay in their homes and out of expensive and impersonal institutional settings like hospitals and nursing homes. Performing this necessary and in-demand work takes a physical and emotional toll, yet these individuals do it with compassion day in and day out.

So why do we treat home health aides as low-wage, low-value workers?”

The problem lies primarily in states’ low Medicaid funding for
home care programs. Though states typically pay an hourly rate for providers
who deliver home health aide services, these rates have largely been low for
many years, or raised periodically, but at a rate too low to keep up with real
costs of living and providing services. Because these rates must cover wages,
training, benefits, new hire costs such as background checks and TB shots, and
supplies, it is nearly impossible for
home health care companies to take such a low rate and provide aides with a wage
high enough to compete with industries like fast food and retail.

News coverage of the issue has been effective in bringing greater public
awareness to the issue, especially as nearly all individuals will be touched by
home care at least once in their lives, whether it be for themselves, a parent,
friend, or other loved one. Now is the time to take awareness and turn it into
action. Call your state legislator and let them know what home care means to
you. Contact advocacy@bayada.com for
information on what you can do to share your voice and support home health
aides.

Home health aides provide a lifeline to millions of Americans, but low wages make it difficult to recruit and retain enough to keep up with the demand. If done thoughtfully, mandatory minimum wage increases can help support these valuable workers

It’s undisputable: Home health aides provide a lifeline to millions
of Americans that need assistance living where they want to be—at home. But low
wages often disincentivize home care workers from staying in the field. The problem lies in Medicaid reimbursement
rates: Home health aides rely largely on state-determined Medicaid
reimbursement rates for their wages, and those rates have stagnated well
below the cost of living—and many states have not addressed this in years.

Luckily, many states have proposed increasing
the mandatory minimum wage. And while many businesses often oppose such
measures—many home care industry leaders
have come out in support of it because they recognize the importance of
aides in helping keep people at home and earning a fair wage for doing so. But
we must ensure that minimum wage increases are done with the recognition that many
home care programs rely on state funding to pay their workers. And if that
funding isn’t increased in tandem with mandatory minimum wage increases, the state could unintentionally be putting
vulnerable residents at risk.

Simply put, if Medicaid reimbursement rates for home care services are not increased at all, or at a rate too low to cover new minimum wage standards, then many home care providers will need to consider whether they can afford to keep their doors open. If providers do decide that they cannot remain sustainable and do decide to forgo providing Medicaid-based home care services, then the real loser is the millions of Americans that rely on that provider to live independently at home. Down the line, this could result in more people who can live at home with help from a home health aide into being forced into nursing homes.

“People want to live at home. And it’s the most cost-effective option for states. Home health aides are the backbone of our industry and we absolutely support wage increases for our workforce, but states need to be thoughtful in their approach to protect the many seniors and individuals with disabilities that rely on home and community-based services. We are working with state legislatures to make sure that they understand the relationship between rates and wages, and the potential risk to vulnerable residents who need home care,” says BAYADA Chief Government Affairs Officer Dave Totaro.

So far this year, 18 states have started the year with higher
minimum wages than the year before. If you live in a state where the minimum
wage is set to increase, then you have a unique opportunity to advocate and tell
your legislators about the importance of home care and of paying home health
aides a living wage. Contact advocacy@bayada.com to find out ways you
can play a role in ensuring that home care is accessible to the many that want
to stay at home, and that home care workers continue to be attracted to a field
that helps them do just that.

Every day, BAYADA employees, clients, and families use social media to connect with one another, keep in touch with distant friends and relatives, and learn about news and events near and far. But social media has evolved far past the traditional definition of “social.” In today’s world, social media gives the home care community the opportunity to spread public awareness about home care’s impact and the opportunity to more conveniently advocate for better home care laws and policies.

Advocacy simply means communicating to elected officials what home care means to you and how it impacts your everyday life. Because our state and federal lawmakers make decisions that affect home care providers’ ability to recruit and retain quality caregivers to serve our clients and their families, it is important that they are able to connect home care to their constituents’ names and faces. Social media outlets, particularly Facebook and Twitter, allow for members of the home care community to advocate from the convenience of their home or office.

Sharing a video of a family expressing the value that their in-home nurse or aide brings to them and their loved ones, for example, enables other social media users to understand how home care impacts them, their neighbors, and thousands of people across the country. Our Hearts for Home Care platform is designed to share videos, quotes, photos, news, and advocacy opportunities with elected officials and the community at-large.

In addition to this platform, it’s important that members of the home care community—including staff, clients, and family members—are aware of the power they hold at their own fingertips. Getting involved in advocacy through social media is easy, and the more we share our voices the better we can be heard. In addition to following our Facebook and Twitter, you can tell your elected officials what home care means to you in three easy steps:

Like and follow them on social media (the links are right on the page!)

Connect with them regularly: Share Hearts for Home Care’s posts with your legislators, post on their pages about what home care means to you, or message them to ask them about meeting them in-person to talk about the value of home care. You’ll find that their pages will also give you information about news and events like Senior Expos and Town Halls that may be valuable for you, your staff, or your clients.

Social media not only brings people who value home health care together, but it shows those who have not yet needed home health care its value and necessity. It gives our industry a face and a voice and allow our representatives and senators to see that it affects real people in their communities, and it shows our elected officials that our friends and neighbors with special medical needs should be able to receive the care they need in the place the feel the safest and most comfortable–at home. To learn more about how you can be a voice for home care, join Hearts for Home Care today.

Relying on a communication device to speak does not stop Mark from being a fierce advocate for disability rights and for the many individuals across the US that, like him, rely on in-home caregivers.

Pictured: Disability rights advocate Mark Steidl (center) joins the Pennsylvania Homecare Association’s Advocacy Day in Harrisburg to tell legislators about what home care means to him. He is pictured here with BAYADA Home Health Care Associate Kimberly Gardner (left) and CEO David Baiada (right).

On May 22, Mark Steidl and his mother Tina joined hundreds of Hearts for Home Care advocates in Harrisburg, PA to express to legislators the importance of home care and of its impact on the thousands of Pennsylvanians that are able to remain safely at home with their families due to in-home services.

Not only is Mark an advocate, but his goal is to complete his Associate’s Degree in Social Work coursework, go on to obtain his bachelor’s degree, and eventually serve in a case management position so that he can continue to help others with disabilities. Mark, who is 23 and diagnosed with Cerebral Palsy, uses a Dynavox to communicate. Mark operates the device by using the switches that are affixed to his wheelchair at either side of his head. The Dynavox allows Mark to type out what he wants to say, and then the device’s speakers enable Mark to communicate out loud.

During their time in the state capitol, Mark and his mother met with Senator Jay Costa, Representative Paul Costa, and Representative Ed Gainey, who represents Mark’s district in the Pennsylvania House of Representatives. To prepare for the day, Mark used his Dynavox to create a message that he would share with each legislator. Mark found it important to not only advocate for himself, but for his caregivers. In addition to advocating for three key issues that PHA outlined as legislative priorities for the home care industry in Pennsylvania, Mark’s speech included the following:

“At home and in the community, I have personal care assistants who help me with various physical things. These assistants are very important to me, as they are to any person who needs one-on-one help, whether people with disability or older people. These aides enable us to live at home and avoid having to go to nursing homes.

“I am advocating today on behalf of home care providers who make it possible for us to have high-quality homecare services… When I think of my priorities as an individual with a disability, my first priority is my health and how it affects my life. But helping people maintain good health should also a priority for society.

I am pleased to be here today because you make decisions that affect people with disabilities and older adults. You have the power to create positive change and to enable people to live good lives!”

When Hearts for Home Care asked Mark to tell us why he advocates, Mark used his Dynavox to tell us:

“I consider myself an advocate for myself and for other people with disabilities. My disability is visible, and many people are likely to underestimate me and not see the person that I am. I have to challenge society’s perception each and every day.

I have to tell people when I first meet them why I use a wheelchair and communication device to talk. I have to explain cerebral palsy. People often wonder how I do school work without the use of my hands, so I have to explain that also.

All of us with disabilities have abilities and accomplishments, but we have to advocate for ourselves in order to create our place in the world.

The efforts of many dynamic leaders, innovators and activists affect our lives every day. The things I do every day would have been impossible 30 or 40 years ago. Before the changes in education laws that occurred in the 1970s, I would have been considered too disabled to attend public school, let alone Community College of Allegheny County. Thirty years ago – before the advent of electronic communication devices, I would not have been able to communicate with you. If I had been born in 1965 instead of 1995, my parents might have been told to send me to an institution instead of raising me at home with all the support I need. Times have really changed. Advocacy and new ways of thinking have created those changes.

But much more needs to be done and much more can be done. We have to keep advocating for the changes and the opportunities we want.”

Mark is an inspiration to many of his peers, and to many who understand the importance of sharing their voice on behalf of others. For ways you can advocate for yourself, your loved ones, and your community at-large, please emailadvocacy@bayada.com.

South Carolina State Representative Garry Smith (R, District 27) visited a local family in his district to learn how his constituents and many South Carolinian families rely on home care to keep their loved ones together at home and out of more expensive settings. Rep. Smith is one of the many legislators that Hearts for Home Care advocates bring into home care clients’ homes to show them how federal, state, and local policies affect home care recipients and their families.

During his visit, Rep. Smith met 21-month old BAYADA Home Health Care client Emma Ferguson, Emma’s mother Gina, and Emma’s in-home BAYADA Nurse Danielle Rian. Emma was born with a Chronic Lung Disease of Prematurity, which causes Emma to experience severe breathing problems, pain, and other symptoms. At her young age, Emma has already had several surgeries and currently still requires use of a Gastrostomy-Jejunostomy (G-J) Tube to assist with her feedings and medication management throughout the day. At birth, state Medicaid authorized Emma to receive private duty nursing (PDN) services in her home so that Emma can remain safely and comfortably at home with her mother.

In March, Emma’s PDN services were terminated when Medicaid determined that her skill level no longer qualified her to receive care in her home. From March until May, Emma attended a local day care facility for children with complex needs so that her mother could continue to work. During this time, Emma was hospitalized on several occasions and required ventilator support due to respiratory illness. In May 2018, Emma’s mother Gina reapplied for PDN services, and Emma was able to start receiving care at home again. Emma currently receives 32 hours of PDN services in her home, and since the reauthorization, she has not been readmitted to the hospital.

Emma’s mother Gina stated, “I’m grateful Rep. Smith was able to visit our home to see how Emma and other medically-complex children can grow up and thrive with in-home nursing. These kids deserve some normalcy in their lives, and I have seen first-hand how much better she does when she can be with me at home rather than in an institution. She only receives 32 hours a week, and this allows her to receive the care she needs in the best place–her home–and allows me to be able to work to support my family.”

After the home visit, Rep. Smith said, “visiting sweet Emma and her family has opened my eyes to what home care means to my constituents and to the many South Carolinians who depend on Medicaid home care to stay with their families and out of higher-cost settings. I look forward to exploring ways we can help keep families together while at the same time effectively managing the state’s budget.”

“One-on-one nursing services have allowed Emma to remain safely at home under the Medically Fragile Children’s Medicaid Nursing Waiver. This program is an alternative to nursing home placement at a lower cost to the state,” said Melissa Allman, Hearts for Home Care advocate and Director of Government Affairs for BAYADA. “In-home nursing care helps minimize deterioration and can prevent costly hospitalizations as staff can address subtle changes in the medical condition before it becomes serious. I hope that more legislators continue to learn about how cost-effective these services are to the state, and how valuable they are in keeping South Carolinian families together.”

Home visits like this one really give elected officials a better understanding of how their decisions on key issues like Medicaid impact real people who are seeking to remain safely at home with their families. To find out ways in which you can participate in a home visit with a local legislator, or other ways you can advocate, email advocacy@bayada.com.

Katie Beckett’s parents advocated for better home care regulations, resulting in the creation of the Katie Beckett Waiver.

President Ronald Reagan meets Katie Beckett, along with her parents, Julia and Mark Beckett, on the tarmac of Cedar Rapids Municipal Airport on September 20, 1984

Today, May 18, marks the sixth anniversary of Katie Beckett’s death. Katie, namesake of the well-known Katie Beckett waiver, was able to live at home due to her parents’ commitment to advocating for better home care policies.

Former secretary of health and human services Kathleen Sebelius called Katie “an inadvertent pioneer in the civil rights movement for people with disabilities” and the inspiration for regulations that have allowed more than 500,000 disabled children to live at home since 1981.

Four months after her birth in 1978, Katie contracted viral encephalitis, leaving her partly paralyzed and with lifelong respiratory difficulties. Her parents, who wanted desperately for Katie to live as normal of a life as possible at home, found themselves in bureaucratic limbo. Katie qualified for Supplemental Security Income (SSI), but if she had been taken home, her parents’ incomes would have caused her to lose that eligibility. Yet her hospital care was topping $12,000 a month—six times the cost of home care.

At a news conference in November of 1981, then-President Ronald Regan cited Katie’s case as an example of federal regulations that, though more expensive for taxpayers, force Katie and other medically complex children to stay in institutional settings even though she could be cared for effectively at home.

At the time of the conference, Katie was 3 years old and had been hospitalized since almost birth. The day following the news conference, then-secretary of health and human services Richard S. Schweiker waived federal rules to allow Katie to return home without the loss of federal support.

Secretary Schweiker also created a review board to handle similar cases. Seibelius said that “thanks to her mother, Julie’s, tireless advocacy…Medicaid policy fundamentally shifted” toward supporting home health care.

Home care worked for Katie, and for many others like her that thrive in a home environment surrounded by family and in-home caregivers that give her the proper amount of support. Despite needing nursing care five times a week and 12 hours a day on a ventilator, Katie graduated from Mount Mercy University in 2001 with a degree in English and creative writing. She also held several jobs over the years, including one as a secretary in a homeless shelter. At the time of her death, Katie was 34 years old—more than three times the age her doctors had predicted she would reach.

The Becketts’ advocacy not only allowed Katie to live a safe home life with comfort and dignity, but resonated around the country. The lasting effects of their commitment to their daughter’s well being have allowed for hundreds of thousands of disabled children to come home from the hospital. BAYADA Manager of Client and Family Advocacy Tara Montague is fortunate to raise her medically complex daughter, Mary, at home due to the Katie Beckett waiver, which is called the Community Care Waiver in her home state of New Jersey.

Tara says, “I am forever grateful to Katie Beckett and her parents. Because of their advocacy, my husband and I were able to bring our daughter home after two months in the NICU, and with home care, she’s been able to remain home with us for the past 20 years.”

If you are hesitant about sharing your voice and advocating for better home care policies, please think of Katie, her family, and their work, which has had a lasting effect across the United States. To get involved, please email advocacy@bayada.com today.